Some News Might be Good News

Tuesday night I felt a little back pain while in bed, unusual for me.  As it happened, we had already scheduled an MRI at Mayo Clinic for the very next day to look at the nearby vertebrae, numbers T5, T9, and T11, and compare that with MRI images from last October.  Doctor WG called last night to talk about those results:

  • Neither the doctor nor the the radiologist can see any significant damage to the bones of those vertebrae.  That is very good news.
  • However, we still don’t know for sure whether the PET scan hot spots are due to increased tumor burden or to inflammation (“flare”) caused by my own immune system attacking the tumor cells.
  • We don’t get much help from blood tests – IgG and M-spike went up a little from the week before, but light chains didn’t.
  • The back pain continues, at level 3 or 4 out of 10, and may actually provide the best guidance.  If it gets worse I can choose to stop this study and go on a proven 3-drug treatment like Revlimid and dexamethasone (DEX) with Kyprolis or Darzalex.  Of those choices, I have only had DEX before – the others would be new to my myeloma.
  • It is quite possible that the pain is not caused by bone damage but by the flare itself, in which case it should decrease as my immune system mops up the remaining myeloma cells.
  • Dr WG believes that the immune system “flare” has reached its peak by now, and should decline from here rather than get worse.  
  • Dr WG also did discuss this whole issue with Dr ML, my original doctor at Mayo Clinic, before calling me.
The back pain isn’t worse, but it has changed a little.  Wednesday it seemed to originate in the spine and radiate outward in the muscles toward my left, but today I can feel it on both sides of the spine.  Muscles along the ribs are sensitive to touch, though the spine itself is not very sensitive.  It is still just 3 or 4 out of 10, which is good. 

There is the possibility that the pain was actually caused by some brief snow shoveling on Tuesday, which followed an 8-mile walk/run on Monday.  So for the time being, there will be no snow shoveling, running, or speed walking until the pain goes away.  Sigh.

I know – I’m whining.  But this is how I get my head around the very important decision that faces me – whether or not to continue on the study.  The study medications have no noticeable side effects, so I would like to stay on it (even though the administration of the study is a huge pain in the posterior).  Any alternative “proven” treatment will definitely have side effects, including and especially those from dexamethasone.  Therefore, unless the back pain worsens or my myeloma clearly progresses, I’ll stay on the study.

The bad news:  Our friend and fellow blogger Pat Killingsworth has died.  Here are his:

He was a fierce blogger, posting something useful about his myeloma journey or about myeloma in general every day.  My sweeties and I knew him and his wife Pattie personally, from their days in nearby Wisconsin.  We miss him.  Go with God Pattie.